What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

New York, NY, October 12, 2017 — Today, the Huntington’s Disease Society of America (HDSA) announced that four new research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. Totaling nearly half a million dollars, these grants represent HDSA’s patient-centric research focus which brings basic and clinical researchers together to facilitate Huntington’s disease (HD) science in the human condition, instead of in animal models, with the direct participation of people affected by HD.

“The 2017 HD Human Biology Project continues HDSA’s history of providing the necessary resources to scientists to better understand HD in the best model of the disease, people”, said George Yohrling, PhD, Senior Director, Mission and Scientific Affairs at HDSA. “Our 2017 fellows will pursue innovative and understudied lines of HD research. Their projects will expand our knowledge of HD by investigating topics related to cognitive reserve, GI disruption, biomarker development and novel neuroprotective mechanisms.”

HDSA received applications from researchers from all around the world. Ultimately, grants were awarded to four research fellows, from the England, Italy and the United States.

Dr. Marina Papoutsi, Postdoctoral Research Fellow, University College London, England: Variability in cognitive impairment in Huntington’s disease: the effect of environment on cognitive reserve.

Andrea Ruetenik, Graduate Student, University of Miami Miller School of Medicine: The protective role of NAD salvage pathway proteins against mutant huntingtin toxicity.

For a complete summary of these four research projects, please click here.

“By funding important science from developing young scientists, HDSA’s Human Biology Project is actively shaping the scientific progress to treat and ultimately cure HD,” said Louise Vetter, President & Chief Executive Officer of HDSA. “As HDSA marks fifty years of working tirelessly to improve the lives of people affected by Huntington’s disease, our commitment to research is unwavering. We will not stop until HD no longer destroys families.”

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are over 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.